"A rare disease shouldn't mean fewer treatments"
Help fund research that gives families like Lilly-May's hope of new treatments for children born with a rare brain disease.
At just four years old, Lilly-May and her family were forced to face this frightening reality.
“I couldn’t believe we were talking about major brain surgery as our only option. It was the scariest time in my life.” — Carly, Lilly-May’s mum
That’s why support for research into RE is so important. A gift today will help fund much-needed research to better understand what causes RE and how doctors might diagnose and treat it earlier to help children like Lilly-May in the future.
Lilly-May's story
When Lilly-May became seriously ill with Rasmussen’s encephalitis (RE), her family were told that major brain surgery was the only option to save her life and stop the disease from spreading. Thankfully, Lilly-May survived the 18-hour operation, but she spent months relearning to walk and talk and she still lives with the lasting effects of both RE and the surgery today.
What we went through was the worst time of our lives. It’s why I wanted to share our story, so you can see why Action’s work matters so much. One day, it could mean that major surgery isn’t the only option and spare another family from going through what we did.
Unlocking the answers
Learn how Dr Ioannidou and her team are helping to better understand RE to help children like Lilly-May
A gift today could unlock the answers to this rare disease
Dr Eva Ioannidou’s research into Rasmussen’s encephalitis is jointly funded by Action Medical Research and the British Paediatric Neurology Association (BPNA). If donations from this appeal exceed the total needed to fund this work, any additional funds will be used to support other urgently needed research for children.